Latest dilemma. I was referred for BRCA testing to Guys who were great and having found I'm BRCA 1 positive have sent me info about their BRCA unit and the fact that I can request an appointment with them to talk through future options/mastectomy etc.
Dilemma is.... Isn't Royal Marsden the ovarian cancer specialist centre? Should I ask to be referred to them instead? Aren't they the ones with all the OC trials? (thinking about treatment options)
Have any ladies identified as BRCA been referred to the Marsden and if so how did you find it?
Alternatively have any ladies been to Guys and how was it?
Thank you
Em
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Emsymits
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Sorry that you've had this new dilemma Em. It's a whole new set of ideas to get to grips with. I don't have an answer for you, I'm afraid, but the team at Ovacome and Target Ovarian have all produced information on a BRCA diagnosis, so it may be worth a phone call to speak to their experts. I'm sure they'd both give you good advice. I think that both charities have published information available on their websites. Good luck with this.
I am BRCA 2 positive and had preventive bilateral mastectomy and both ovaries removed being cancer free. All post surgery biopsies were found clear. Looking back the most important feedback you need is to understand the statistics and the risk you are taking is you choose not to have the preventive procedures so that you can make an informed decision. At this stage both centres should be able to to that. Should you decide to go ahead with the procedures then you need to do some research which consultants surgeons are the best. I had mine privately but both consultants were at the Royal Marsden
My genetic testing was done at Addenbrookes which is not where I am treated. I had a meeting with the geneticist there ( which I suspect is what you are being offered) it was really interesting and helpful in looking at managing my risk going forward. I've decided against mastectomy at this stage as my risk is falling.
If I had wanted to go ahead they would have referred me back to the hospital I go to for oncology with a recommendation.
I have had everything done at Guys. The radical hysterectomy, chemo, genetic testing etc. I'm brca 1 & 2. I found the genetic testing consultant very helpful and informative.
I chose my hospital by location. Convenience really matters as you spend a great deal of time to and fro from appointments. I wanted a hospital that did a great many Gynae operations.
Marsden has a great rep and believe me, if it were the only place for a trial that would aid me, I would travel there.
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